Conflict- on imbruvica per oncologist, orthopedic disagrees

[MyStarlite1]

I have been on imbruvica for 3months. I had bilateral knee replacements march 2018. I cut my knee a few weeks ago and it became severely infected, I went to the hospital August 23 for an I and D And I’ve been on antibiotics ever since. Off imbruvica from August 23-30. Three days after restarting imbruvica, my knee was showing symptoms of a recurring infection. I am on home IV broad spectrum antibiotics for six weeks. When I went to my orthopedic surgeon yesterday he stated he did not want me on Imbruvica. If I don’t get rid of the infection, they have to take the implant out for six months and try to get rid of the infection. After reading about possibilities of infection with Imbruvica , i’m wondering if I will heal. I’m thinking of going to Mayo Clinic or Duke for a CLL Specialist.

[lankisterguy Volunteer]

Hi MyStarlite1,

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Welcome to our group, I see you joined us today. Seeing a CLL specialist would help significantly, but unless you have already been seen by that specialist it make take some weeks to get even an urgent appointment. I hope you have a relationship already established with a specialist.

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Here is a list of specialists, you may want to call each of them to see if they can see you immediately or have a video appointment. cllsociety.org/toolbox/cll-...

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A possible alternative is to try this option: cllsociety.org/cll-society-...

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Or call the LLS and ask for guidance / help from them

lls.org/disease-information

Information Specialists

Speak one-on-one with an Information Specialist who can assist you through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information.

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Len

1-800-955-4572

Live chat

Email

[Tommays56]

Hi My

I am profoundly unqualified to give medical advise BUT it would seem you need to address the big issue in and ASAP manner as it seems quite serious

[Hidden]

i read your post several times. I think there is no miracle answer here.

[Newdawn Administrator]

Quite a conundrum you have at the moment. Is there no chance of your haematologist and orthopaedic surgeon getting their heads together (by phone) to discuss a possible way forward?

If the Ibrutinib is definitely impacting on your ability to fight off this infection, a clear decision needs to be made based on a risk analysis. You need the very best haematological advice you can obtain.

Sending best wishes and please let us know how things go.

Newdawn

[MyStarlite1 in reply to Newdawn]

What is FCR. I am new at this but learning fast

[Newdawn Administrator in reply to MyStarlite1]

I think your question was intended for Redlion who mentioned it but this describes FCR chemo;

FCR is a combination treatment used to treat chronic lymphocytic leukaemia (CLL) and some types of non-Hodgkin lymphoma (NHL). It includes the three drugs:

fludarabine

cyclophosphamide

rituximab

Regards,

Newdawn

[MyStarlite1 in reply to Newdawn]

Thank you so much. I was hoping someone out there had something similar. You have helped my decision with what to do. Thank you again

[Redlion]

I had a similar scenario a couple of years back. Was about to start on FCR but developed acute tibial osteomyalitis a week before the start. Was hospitalised and on IV antibiotics for a week followed by 6 months on oral antibiotics all the while being under threat of amputation ( which fortunately did not come to pass but was very imminent at times), during this time my already advanced CLL was becoming evermore symptomatic but the imperative was to deal with the osteomyalitis, so my CLL treatment went on the back burner and only started 9 months later. Due to the risk of a resurgent osteomyalitis I was able to argue a case for Ibrutinib over FCR which I did but it was clinched by a retest showing I had developed a TP53 mutation since the first test. My take would be that your infection is overwhelmingly the imperative to sort out and then restart the Ibrutinib once that is behind you, but you do need to get your orthopedic and haematology consultants to work together on this and be very proactive in advocating for yourself. I wish you good luck and hope you manage to find a successful way through this very difficult situation. Best regards

Mike

[bkoffman CLL CURE Hero]

Resolving the infection is the imperative. If the infection gets into the implant, it is difficult to resolve. The data on Ibrutinib and infections is mixed. Fewer infections in the 2nd year of treatment and improved IGA levels and T cell function, but there is risk, especially of fungal infections. I will be publishing more on this but your situation can't wait. For more on this see: ncbi.nlm.nih.gov/pmc/articl... and this bloodjournal.org/content/13... and this ncbi.nlm.nih.gov/pubmed/263.... It's complicated. Brian Koffman CLLSociety.org